SarcoidosisUK - Sarcoidosis and Fatigue

SARCOIDOSIS AND FATIGUE

Fatigue, or extreme tiredness, is one of the most common complaints for sarcoidosis patients. It has a negative effect on their quality of life.

What is Fatigue?

Fatigue has no simple definition but includes a lack of physical or mental energy or motivation. People describe it as an overwhelming sense of tiredness with no obvious cause.

Fatigue cannot be exactly measured or shown with medical equipment.

Fatigue During Sarcoidosis

The majority of sarcoidosis patients display symptoms of fatigue at the time of diagnosis. This is probably caused by the inflammatory process of the disease. Certain proteins (cytokines) are produced by the immune system as a result of the infection. These proteins may cause symptoms of fatigue.

Further Information About Fatigue

The MS Society has excellent information on managing fatigue. Most of this information is about fatigue in general - ignore the sections specific to MS.

Action for Pulmonary Fibrosis has lots of information about coping with breathlessness, a common symptom of sarcoidosis which may be associated with fatigue.

More information about fatigue from Medicinenet. This information is not specific to sarcoidosis.

The majority of patients, both men and women, suffer from fatigue. The severity of sarcoidosis seems to have no influence on the degree of fatigue experienced.

Symptoms of Fatigue

Fatigue affects people in different ways, and it may change from week to week, day to day, or hour to hour. Symptoms of fatigue may include:

  • Extreme tiredness after very little activity.
  • Waking up feeling as tired as you did when you went to sleep.
  • Heavy limbs.
  • Difficulties with balance, vision or concentration.

Fatigue cannot be tested and there is not always a professional to consult. This can all make it complicated to explain your fatigue to friends, family, colleagues and health and social care professionals. They may unhelpfully ask you to 'make a bit more effort' or 'stop being lazy.' It can make the problem worse that patients may still be able to be active and sociable some of the time. This can lead to tension at work and social situations.

It is often the case that patients in remission from sarcoidosis still feel tired. When these symptoms last for longer than 6 months, it may be called ‘chronic fatigue’. It is not known exactly how many sarcoidosis patients suffer from chronic fatigue.

Chronic Fatigue

Although it is clear that chronic fatigue associated with sarcoidosis begins during the illness, the precise cause of the fatigue remains unknown.

Chronic fatigue after sarcoidosis is often accompanied by these symptoms:

  • pain (throat, head, lymph nodes, joints);

  • concentration and memory problems;

  • sickness after exertion;

  • anxiety and depression;

  • uncomfortable walking;

  • decreased muscle strength;

  • less physical activity.

As such, chronic fatigue after sarcoidosis decreases quality of life significantly.

Techniques to Understand your Condition

No specific, medical examinations to diagnose fatigue are available. However, your doctor may be able to investigate your fatigue in a number of ways.

  • Fatigue Assessment Scale: Your doctor may measure and track your fatigue by asking you questions using the Fatigue Assessment Scale (FAS).
  • Sleep research: at home or in hospital you sleep for a night whilst connected to equipment which registers sleep. Sleep disorders may then be discounted as the cause of the fatigue.

  • Actigraph: a type of pedometer which records physical activity is worn. This establishes how active you are and how to spread your energy more efficiently.

Treatment

There is no cure for fatigue. The only proven therapy is combining Cognitive Behavioural Therapy (CBT) alongside slowly building physical activity with the guidance of a physiotherapist. However there are a number of lifestyle choices that will combat fatigue:

  • Live healthily. Eat a healthy, varied diet. Do not smoke, drink alcohol in moderation and do not drink coffee before sleeping.
  • Look to the future and make plans. Making plans really helps. It is better to look towards the future and not to keep looking back. Talk to loved ones and find out about your nearest SarcoidosisUK Support Group for inspiration.

  • Maintain a healthy sleeping pattern. Try to sleep during the day as little as possible (or not at all) especially if you experience restless or light sleep overnight. An afternoon nap is nice, but too often it can disrupt a healthy sleep-wake rhythm.

  • Consider your mental health. Having sarcoidosis is tough and can contribute to mental health conditions such as depression. Call the SarcoidosisUK Nurse Helpline or consider talking to a mental health specialist if you are concerned.

  • Finally, stay active! Stay as active as possible, not only physically but also mentally and socially. If you can, exercise for 30 minutes a day at moderate intensity, 5 days per week.